Wednesday, April 16, 2008

Sinking Into The Quick Sand...As Slow As Molassitude...

I suppose yet ANOTHER explanation is warranted to all y'all who have been sending me emails and leaving comments on CHEESE, etc., regarding the disappearance of CHEESE CHAT, the MS Tapestry Project, and general inquiries about my health. I really haven't been ignoring you, in spite of trying desperately to IGNORE the overwhelming fatigue I have been experiencing of late.

I don't like to post/write about MS fatigue...particularly my OWN. Somehow, like millions of "others" who have never experienced MS fatigue, I still hold court in the back of my mind, trying to determine if I am REALLY experiencing a debilitating symptom of MS...or, if I've just succumbed to being LAZY.

There...I dared to say it. Most of us with MS DO think/wonder that about ourselves anyway whenever we are battling neurological fatigue...one of the primary symptoms of Multiple Sclerosis. And since I can only speak for myself, I'll just say "I" worry about balancing this crazy thought process between lazy inertia and literal neurological dysfunction that creates MS lassitude.

Webster's Revised Unabridged Dictionary defines "lassitude" as: A condition of the body, or mind, when its voluntary functions are performed with difficulty, and only by a strong exertion of the will; languor; debility; weariness. I'd have to agree with dear ol' Webster once again...my performance of late has been "with difficulty". And it has ONLY been because of strong exertion I am getting through my work days. I find myself feeling exhausted (but not necessarily "tired/sleepy") routinely each day. Nor do I feel depressed (said just for all of the armchair psychiatrists, such as myself).

What I struggle with mentally when trying to FORCE myself through my MS lassitude is determining WHAT activities might actually benefit me, i.e., give me more energy and less fatigue, and what activities of my daily life will end up zapping me of my strength, like Kryptonite sucking Superman's will to live. And I have to admit, I am NOT very good at making these judgments for myself. I know exercise DOES increase my energy stores in the long run (no pun intended), but OVER-EXERTION physically zaps me. I know that sometimes, if I just "push" myself to get to work, once I am there I feel fine...other times, once I am there, I feel like I want to die...if for no other reason, than to LAY DOWN! It is a physical balancing act that seems to change on a daily (sometimes hourly) basis.

And then there is the mental/emotional toll MS lassitude/fatigue takes...I'm REALLY skilled at convincing myself I am simply being "lazy" versus neurologically impaired. I sometimes jokingly refer to my fatigue as "MS Assitude" or "MS Molassitude"...or "FAT eeg" because I am overweight. Somehow making fun of my inability to get up and go because of a character flaw seems much more palatable/acceptable to the general public than trying to explain a HIDDEN neurological condition...everyone can relate to LAZY, yet few can relate to true MS lassitude...just like everyone can related to the assumed pain of a broken bone. A broken leg is tangible, visualized, experienced by many...MS remains an obscure, poorly understood disease.

I no longer experience intense rage when a well-meaning (or even NOT well-meaning) person tries to relate to my fatigue by aligning with me and saying, "Oh, yes...I'm really tired, too". My usual response NOW is to say, "I'm sorry you are not getting enough sleep" (my prior response used to be thought in my head: "Hey, there's a difference between being a lazy a$$/staying up partying too late/__fill in the blank__ than what I have going on!")...and I leave it at that. I seriously believe unless someone has EXPERIENCED MS lassitude, they have absolutely NO background to base their comment on, EXCEPT generalized tiredness. It's not their fault really...and I'm certainly not WISHING MS fatigue on them!

But, I DO still experience my own form of "MS lassitude guilt"...somehow, I can easily cut the ignorant slack (those who have no idea what I am experiencing, yet want to relate), but I continue to beat my own character with a stick. It was ingrained in me, after all, to NEVER be lazy...to work hard for what I get...to go the extra mile. I'm lucky now to make it the extra BLOCK, let alone a mile! Somehow, in my mind, if I only "try" harder, I will be granted magical points on my success card...unfortunately, the only one REALLY keeping score on that card is ME.

So, as you can see, this post is being written from my place of MS lassitude guilt. I am trying to explain away to y'all the WHY'S of my falling short of my OWN expectations of myself (because NONE of YOU have demanded anything from me!)...the reasons and rationales WHY I have not scheduled another CheeseChat time or continued my efforts toward the MS Tapestry Project. I've been sinking in the quick sand of fatigue and too PRIDEFUL to admit this publicly. What you don't know can't hurt you, right???

But what I choose to NOT know or IGNORE can and does hurt me...so I'm letting you in on my little secret. I'm effing tired/fatigued and I can't manage any more right now than simply getting out of bed each day and going to work. I "should" be thankful I still CAN get out of bed and go to work..but frankly, I'm not all that thankful in the moment...I'm wallowing in a severe case of a bad ASSITUDE...LOL...

14 comments:

MS Molassitude!! I love that... slowwwww as molasses in January, yup. Only it's worse in July/August, I find. If it can be worse that is.

You drive yourself hard, Linda. Spoken from one badassitude to another. I remember you saying once to me "you're a nurse, of course you'll ignore this advice". LOL. So listen hard with your eyes, girl, and *take it easy* on you. I can almost see the smoke rolling out of your ears.

hope your assitude is better today, love that expression btw!! would write more but need to find me some guide books for st petersburg, rome, and berlin - one might not think that's a hard job but i want a small & cheap but still informative, good one - trust me there are TONS out there, now off to try to find one which fits my needs & wants

Reading your post I was reminded of the years I obviously (now looking back) had undiagnosed MS, had 2 kids at home (ball games/recitals/ect.) and worked a very physical full time job. I don't know how I lived through it. It was an emotional and physical battle.I'm actually counting my blessings that if I have to have this disease, at least I was ordered not to work. My bad assitude was finally validated. I know it's not an option for everyone, and the financial picture can add more stress and fatigue, but I don't have to push me and my MS and perform on someone elses schedule.So, don't feel bad...you do what you can. We can't take it personally, the diease surely doesn't follow any rules. It is what it is.

Being a fellow new blogger and fellow MSer here I do enjoy your whitty comical posts. I relate to the fatigue you feel and yes it is different then just "being tired" I am still in relapse as we speak here waiting for my left eye to hopefully clear up.

Seriously, though, I don't, and know it. I do know what it does to my MIL. She's a trooper, too, and I have caught her trying to "push through" her fatigue, which always ends up leaving her laid out for a few days after.

On the plus side, I know that if I need to take her shopping, it's usually a short trip. :D

Pa, does not get out enough. Or out too much,but back to U. I am glad OU said this and not me. I have taken on too many things blog-wize and now I can't/wn't/don't want to quit them, but regular posts are suffering---crap on a stick! HEY..a patent I smell.

I understand COMPLETELY! I hate the "symptoms poker" game that people play: "I'll see your lassitude, and will raise with fatigue and blurry vision from being up late last night watching the game. It has to be much worse than your fatigue."

If anyone has ever visited my blog, they know that fatigue is my biggest problem. But it has taken me years to connect the extreme fatigue to MS, so I spent a long time beating myself up for being lazy. It is a slippery slope - I beat myself up for being tired which makes me more tired and a little depressed, which then feed the fatigue... you get the point...

Now I am filling out paperwork for disability due to intractable fatigue. How lousy that makes me feel simply cannot be described. And who isn't tired? So why am I any different? I'm just lazy. Oh dear, the cycle is starting again! Here comes the quicksand!!!

I remember being a working person, less than a year ago, and feeling the same. My life consisted of getting ready to go to work, getting there and putting in my hours, coming home and attempting to recuperate enough to do it all over again. No time for exercise, true rest, or much of a social life so beaten and fatigued was I. After taking a few months off on state disability I quickly realized that I felt rested and somewhat refreshed for the first time in over a year. That was when I made the very difficult but right decision to apply for social security disability. Now I'm "retired" at the sage age of 56 and I spend my time taking care of ME! So, dear cheese, you will know when the time is right for you to change, amend or modify your work situation so you can conserve energy for a better quality of life. This may mean anything from working less days, different hours, different job duties to just taking some solid time off. My thoughts are with you... Sue in California

May God strike me dead if I'm lyin...I started to read this post on Friday afternoon and was suddenly overcome by a yawning fit that led to feeling like I was under a wet blanket that was holding me down so each and every slight movement took a whole lot of effort.

I got up, went to my recliner and just sat there. An hour later my old man woke me up because it was time to get our son from school. I had fallen asleep sitting up. I hate that.

I came back here to comment BEFORE I read the rest of it. I have such an impressionable mind. LOL

Survivor MS

HAWAII 2014 PARASAIL

EMAIL:

LOCATION:

Seattle, WA, USA

AGE & OTHER TRIVIA:

53/female/Leo

DIAGNOSIS:

Relapsing & Remitting Multiple Sclerosis--Diagnosed 04/15/2003--(because having to pay taxes that day just wasn't enough!)

MEDICATIONS:

I have taken Copaxone, Avonex, IVIg, Tysabri, and 5 doses of Novantrone in 2007. I also participated in a Rituxan Study in 2005-2006. In the fall of 2007, while still on Novantrone, I began having "break through" symptoms, which became more and more frequent. In March 2008, I had an MRI that showed many enhancing lesions--Novantrone was no longer effective. Tysabri had been discontinued in November 2006, due to a questionable "anaphylactoid reaction". I received my first restart dose of Tysabri on April 8th, 2008, without experiencing ANY allergic response...I completed 9 doses of Tysabri in 2008, but continued to have some relapsing symptoms. I have, since December 2008, stopped all Disease Modifying medications and feel great...but don't tell my neurologist!